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DoozlyGirl

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  1. Hi. Congratulations on finding some answers. I haven't been on this site for a long time, but saw your post come through in my email. I have been managing OI for 7 years and MCAS for 4 1/2 years and a few things popped in my head when I read your post. Take notice if you react to the Gatorade, as many with MCAS degranulate/react to the dyes and preservatives. Also many with MCAS can't tolerate beta blockers, and betas are contraindicated in patients who carry epi for anaphylaxis. If betas are absolutely necessary, you may need to carry glucagon to overcome the effects of the betas in the event you need to epi. In my own case, I have found managing my MCAS eliminates my OI symptoms, so my mast cell regimen and avoidance/figuring out my triggers really allowed me to get my life back. Best wishes on this part of your health journey.
  2. Hi all, its been a while since I've been here. I did the 23andMe testing several years ago, and have been able to make significant progress in regaining my health due to the things I have learned from my genes and biochemistry. The FDA's issue with 23andMe is that they are providing medical advice in the form of their medical reports and have circumvented the typical approval process for medical devices. 23andMe continues to sell tests and provide the raw data, which many use one of several programs to parse out their genetic data from the raw data and they are now pursuing medical device approval. All of the laboratory processes are performed thorugh an accredited and FDA approved lab, so no worries here. I have a friend and family memebers who have recently submitted samples. I highly encourage others to consider this test as a tool to learn more about your own biochemistry, as long as you plan to follow up on the data and find a local expert to help sort it all out. Best wishes, Lyn
  3. Katrina, i have been diagnosed with MCAS by Dr Afrin. There are over 100 different known mast cell mediators, likely up to 200 (per Dr Afrin), and the various symptoms are likely related (at least in part) to the various mediators that are released during mast cell degranulation. I have very pale skin and flush all the time, have frequent headaches, and have plummeting BP as my primary reactions and a few times a month have vomitting, or big "D". Many MCAS folks consider themselves to be a leaker, shocker or both. This describes how the mediators are released: slowly a bit at a time or explosively all at once. I do both. And my symptoms point to histamine, and prostaglandins, but my positve testing showed TNF, heparin, NSE. Flushing is NOT required for MCAS. Some itch, some have hives, welts or a rash, or have swelling or angioedema and don't flush at all. Any skin related symtoms AND symptoms from a second organ system (plummeting BP, GI cramping/vomiting, "D", throat tightness, breathing issues, etc) consitutes anaphylaxis, and points to mast cell activation. There is some suspicioun that JHS is actually a form of EDS, which has been implicated in MCAS, as mast cells are located in connective tissue. If you are consistently having symptoms, it could mean you are in what has been described (by one of our own members) as low grade anaphylaxis all the time. That is what happened to me. I had to eliminate any possible triggers in order to lower my bucket enough to see that my symptoms finally had a beginning and an end. Eventually I went from 'leaking' all the time with worsening crises to having periods of no reactions,with minimal reactions and moderate shocking, and with occasional major shocking. Synthetic chemicals (FD&C dyes, perfumes/scents, artificial sweetners. MSG, preservatives, sulfites, parabens, benzoates, alcohol, etc) are my worst triggers. It is possbile your foods, environment and your meds could be filling up your bucket. Just something to think about.... Best wishes in connecting your dots, Lyn
  4. Here are several publications that I have found. Hope none of them are duplicates what was already shared in this thread. http://www.nejm.org/doi/full/10.1056/NEJM200002243420803 http://www.ncbi.nlm.nih.gov/pubmed/12438171. http://www.ncbi.nlm.nih.gov/pubmed/11458707 http://www.ncbi.nlm.nih.gov/pubmed/12589229 Lyn
  5. This is absolutely riviting news, Issie! Congratulations, you hard work has paid off in a huge quantifiable way -- proof that nutrition/diet and getting at underlying core issues can move one towards health. Please keep up posted on your progress. Lyn
  6. Welcome Shelley, I was diagnosed with autonomic neuropathy and orthostatic hypotension which we later learned that my immune system (MCAS) was holding my autonomic nervous system hostage during my anaphylactic reactions to everything from meds, foods, CT and MRI contrast, personal care products and home products, and other items. I do see many similarities and believe mast cells could be involved in your reactions, especially delayed food reactions and to CT contrast. You'll want to share these documents with your surgeon and anesthesiologist as they include important information regarding mast cell degranulating medications and surgical considerations in mast cell disorders. http://www.mastocytosis.ca/symptoms.htm http://www.mastocytosis.ca/sa.htm While both POTS and MCAS are syndromes, this means they are actually collections of symptoms, and are not diseases. They do not indicate the cause of your issues. I have recently learned that I have many transciption errors in my DNA that point to decreased efficiency/blocked enzymatic pathways within the biochemistry of my phase 1 and phase II liver detoxification systems. MTHFR falls under phase II and is a really important indication that you can't properly convert inactive folate to active folate, as well as hosing up dozens of other critical functions. In general, these SNPS - single nucleotide polymorphisms/DNA "mutations" are due to methylation issues. I'd suggest pursuing further testing to look at other mutations/SNPs that are impacting your biochemistry and causing your immune system to go into overdrive. I believe your infections (candida/SIBO, miscarriages, GI issues, strep, food allergies) are likely attributed to methylation issues. Google MTHFR and begin reading about 23andMe geneome testing, MTHFR testing and importance of looking at additional SNPS. Dr Amy Yasko and Dr Ben Lynch are also both credible resources. Good luck with your surgery. Lyn
  7. Dr Theoharides at Tufts in Boston does not see patients, as he is not licensed to practice medicine in the US, but he is one of the top mast cell researchers. Dr Castells is at Brigham and Women's in Boston. Here is a list of mast cell docs who sit on the TMS medical advisory board. http://www.tmsforacure.org/medical_board.php
  8. tpapik, How horrible! I totally agree with what's already been posted. What in the world gave your doc that impression??? Morphine is often considered the most degranulating medicine out there. Even healthy people have issues/adverse reactions with morphine. Mast cells are readily found lining the GI tract and any other tissues that interface with the environment, such as the skin and lungs. Mast cell neoplasms like leukemia and lymphoma are EXTREMELY rare, like only a couple of hundred cases on the books rare. Most of the folks on several sites I'm on have issues with both, so I hope this gives you some comfort. The first step is a tryptase and if that falls below 20, then systemic mastocytosis (SM) may be ruled out. Once SM is off the table, then MCAS should be explored. Take care, Lyn
  9. Hi Darlene, I am glad to hear your procedure went well and that you did not react. The Nuc Med V/Q study you had done is primarily performed to look for blood clots in the lungs. This study has been around for nearly 3 decades. In recent years, improved imaging capabilites of CT scanners have made the CT scan a viable option looking for blood clots in the lungs. Since CT scanners are manned 24/7, it is often more conventient and less expensive on call payroll to just have the patient have a CT scan than to call in the Nuc Med Tech. Patients with a history of reactions to CT contrast, may likely tolerate the radioactive tracers used in the V/Q scan. I've read that Dr Castells has recommended that patients premedicate for any imaging procedure, no matter if contrast is administered or not. But it is the call of the ordering physician. As Ana has often shared, there are numerous imaging procedures to investigate any number of concerns, and short of looking for an erupting aneurysm, there are multiple imaging options available that do not require contrast media. Don't be afraid to ask your doc about those options. If your doc doesn't know the available options, have them consult a radiologist. There are other imaging modalities to consider: CT without contrast, ultrasound, MRI, nuclear medicine, x ray, echo and others. Best wishes, Lyn
  10. bebe, You really don't want to go through your insurance company to get your medical records. :] In the US, release of medical records requires a signature (HIPAA) if the records are to leave the healthcare system. You can request a medical release form while at the doctor's office, fill it out and put on that date and when the records and blood or testing comes back, they will send you the records or you can pick them up and you will most likely require to show an ID. Or you can fax back the signed form later. Some healthcare systems may even have the form on a website or can fax it to you. I keep copies of medical release forms for each healthcare system in a folder. I am personally not comforatable having my records faxed, as there is NO real security with faxing, as the person sending them could easily fax them to the wrong fax number, with your name, DOB and SSN on them. You wouldn't believe how often that happens. In my old job, I got medical records by mistake on my fax machine several times a month. I keep my own records and when a new doc out of the healthcare system wants my records, I bring them my records and have them make copies from mine. I don't trust that others are going to correctly determine which records are important to provide. I learned the hard way when I was referred to Mayo and my referral was rejected. I later learned that they only saw 28 pages of my medical records. And no one could tell me which 28 pages were sent. I'm not sure if this works in other parts of the country, but this has always worked for me. When requesting medical records in bulk, you will likely be charged per page. Most health systems will release medical records for "continuing/ongoing medical care" [one of the choices on the form] and not charge the patient as long as under their threshold to charge. My former employer used 10 double sided pages/5 pieces of paper as their charging cut-off. If only a few pages are requested, then they send at no charge. I've gotton into the habit of requesting medical records by date of appointment. So If I see two docs in the same day, I will fill out one form for each doc and most assuredly those individual records will be processed separately and be under the threshold for charging me. If I filled out one form for both docs for multiple office visits, it would cost me money. You can request a copy of any medical imaging procedures on CD and the report as well. If you permanently move/change to another health system, I suggest permanently checking out your medical imaging films, as once you are no longer an active patient there, they will destroy your films. Your new healthcare system may scan in those films or want to keep them on file. If not, keep them at home until you need them. Each healthcare system sets up their own retaining policies. Inactive films are usually destroyed within a few to 5 years, while mammograms are kept longer. These days most imaging studies are performed digitally, but you'd be surprised how many still have hard copy films. Digital images are kept longer, as there are minimal storage issues compared with actual folders and films. I agree it is quite important to get a copy of all your records and review them when you get them. If you find any errors, it is important to get those errors fixed in the medical record, or those errors will follow you. The ordering/dictating doc is required to maintain accurate records, so they should be the one to help you get the information fixed in your records. If they won't/can't help you, then go to the medical records department at the hospital/clinic and ask to speak with the manager/director. Most healthcare systems have moved to electronic medical records supported by the hospital, but you may need to request records with individual physicians verses going to one place - Medical Records/Informatics Department. It depends how they set it all up. Note that they likely won't release records for other physicians from out of network. So even if Doc A referred you to Doc B and Doc B sent your records to Doc A, you would most likely have to request records from both Doc A and Doc B, as Doc A likely won't release those records. The content of your medical records belong to you, but the form/media of the records belongs to the healthsystem. So don't let anyone hassle you when trying to get access to your records. I know I gave you way more information than you asked for, but hope this information is helpful. Take care, Lyn
  11. Once I got past my hangups about having the placard in the first place, I began calling it my "trump card" and use it when I need to, and keep it in my visor on days I feel good. i don't even think twice about it anymore, and have been glad I've had it dozens of times! Lyn
  12. Darlene, As you likely know already, CT contrast is a common mast cell degranulator, so the mast cell docs recommend premedication. In case you ever need a CT in the future, you may want to send a PM to Ana, she also has MCAS and had a MAJOR anaphylactic reaction to CT contrast. I know she has done tons of reseach on contrast and MCAS. So you ended up with a Nuc Med V/Q Lung scan? How did it go? Lyn
  13. Kris, Did he share WHY he thinks your issue is a localized problem and not a systemic one? Maybe it's both. His description of hypersensitivity thermogregulatory issues provoked by hot or cold sounds a lot like Cold and/or Hot Urticaria to me. And this is a mast cell disorder, which many have been diagnosed with before the term MCAS was even coined. Was the room hot or cold when you kept flushing during you appointment? And what happens if this guy is wrong? Does he have expertise in EDS or mast cell activtion syndrome? Because it is hard to connect the dots until you are in the weeds trying to understand the complexities of any of this. I'll be honest, the mast cell diagnosis is not the magic bullet, because then you have to figure out the whys/causes of mast cell issues. But I have learned there is NO MAGIC BULLET. Understanding mast cells has taught me what is happening in my body and how my misbehavin' mast cells are triggering my debilitating autonomic issues through anaphylaxis and plummeting BP. Learning about the things tht could explain why my symptoms come and go is a HUGE part of me being able to manage and accomodate my symptoms. This is allowing me to focus on fixing my broken biochemistry. Figuring out what is going on in your body and what is causing your symptoms and ill health IS DEALING with it. Best wishes, Lyn
  14. Rama, I agree that the XMRV fiasco must be avoided in the future. What a terrible blow to anyone in the chronic illness world. While the work of Rick Van K has been remarkable and his presence is missed greatly in the CFS world, he is not the originator of the methylation concept in chronic illness. Rich got interested in CFS to help out a friend and used his research skills and experience at Lawrence Livermore National Laboratories to help his friend find relief from debilitating symptoms of CFS. From what I've read on Phoenix Rising, he learned of Dr Paul Cheneys thoughts on glutathione deficiency, found Dr S Jill James work on methionine cycle blockage, then stumbled upon the work of Dr Amy Yasko using these theories to treat autism, prompting him to create several versions of his simplified protocol for CFS based off the Dr Yasko's intensive and SNP driven protocol for autism. His simplified protocol was derived off generalities of what is likely happening in PWCs, and is not patient specific, in the way that Dr Yasko's protocol is. As far as I know, Rich's simplified protocol and theory did not have published clinical study data yet to back it, but there are dozens of people of several CFS sites that state they have found relief, and that efforts are underway to study his theories. His obit mentioned "Rich suggested that an existing treatment for autism might be used in the treatment of ME-CFS". Rich's Obit http://www.legacy.com/obituaries/modestobee/obituary.aspx?pid=160243735 In his own words, he talks about the journey he took in connecting these dots, Rich wrote. "I want to emphasize that I did not develop the Glutathione Depletion–Methylation Cycle Block Hypothesis out of thin air. The autism researchers had already provided a convincing basis for this model in that disorder. S. Jill James and coworkers did much of the clinical work that underlies it. Richard Deth and his coworkers had worked out much of the theory of the methylation cycle block and had applied it to autism. Professors James and Deth had been presenting talks on their work at autism conferences. The physicians in the DAN! project (as well as Dr. Amy Yasko, though I had not yet learned of her work when I began to understand the importance of the methylation cycle block) had already been treating autism cases by measures intended to lift the methylation cycle block. What I did was to apply the results of their work to CFS, and to present a detailed biochemical and symptomological case to support the proposition that this model also applies to CFS." Rich's Journey in Creating his Simplified Methylation Protocol http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/treating-chronic-fatigue-syndrome-mecfs-glutathione-and-the-methylation-cycle/a-simplified-treatment-approach-based-on-the-glutathione-depletion-methylation-cycle-block-pathogenesis-hypothesis-for-chronic-fatigue-syndrome-cfs-by-rich-van-konynenburg-ph-d Dr James has 130 published articles on various aspects of methionine cycle dysfunction. Below is her shortened bio, and link to her current employer. From what I could find she had published in MTHFR, a methylation blockage as early as 1999. Much of her early work focussed on Down's syndrome and MTHFR/folate metabolism errors. Dr S Jill James http://media.mindinstitute.org/video/graphics/dls/2010/james_bioabstract.pdf http://www.ncbi.nlm.nih.gov/pubmed/?term=S+Jill+james http://achri.archildrens.org/researchers/jamesj.htm Dr Yasko is a molecular biologist, medical researcher, and naturapathic physician, who is often credited in linking together several adjacent cycles and looking at methylation as a whole in the methionine cycle (including transulfuration pathway), folate cycle, BH4 cycle and Urea cycle. She has also identified critical genes along these pathways to include in nutrigenomic testing. She also uses biochemical testing to evaulate if those SNPs currently contribute to enzymatic blockages. Her approach is to systematically open up critical pathways in a specific order using various testing methods to determine which steps to take, then after confirming that the SNPs correspond to specific biochemical testing indicating decreased enzymatic efficiency, she recommends various cofactors, vitamins and other molecules to open up those blocked pathways to ultimately resore functioning of these 4 cycles, restore natural inate detoxification capabilities, and produce ample glutathionine. There is so much more to it than this. I've been actively studying this for 6 months and am intrigued that I finally found tools to help me sort out my messed up biochemistry. Dr Amy Yasko http://www.dramyyasko.com/our-unique-approach/methylation-cycle/ Rama, I'd love for you and your wife to really spend some time reading up on Dr Yasko's protocol, and then share your thoughts, once you get a handle on her approach. I don't necessarily believe it is going to take all those supplements to get me well, but am finding great value in her line of thinking to help me make better choices and avoid things that trigger my mast cells to degranulate. If you are interested in more information, there are several 200 plus page ebooks available free of charge online that shares the bulk of her protocol. I'm currently reading this one, called Autism: Pathways to Recovery, with a link below. Her website contains all of her references. This book is meant for parents and patients to describe her approach. There are tons of her presentations available on her site with full references. http://www.dramyyasko.com/wp-content/files_flutter/1327512160_9_1_1_8_pdf_02_file.pdf I may not be a PhD medical resarcher, but there are dozens of MDs, NDs, DO's and PhDs that are all taking note of this approach to sorting out chronic illness. I didn't know this world even existed until 6 months ago, and everyday I learn something new. It is underground for the most part, but PENN state, University of Arizona and UC Davis have opened nutrigenomic programs, so I expect this concept will continue to grow. Lyn
  15. Kris, Cold urticaria, facial flushing and swelling are related to mast cells releasing histamine and other mast cell mediators. Excercise is a common trigger to release mast cells, and the two symtoms flushing and facial swelling are indicative of anaphylaxis. There is a condition called excercise induced anaphlaxis, you may want to read up on. I also wonder if you have a set of epi pens, as the swelling could very likely progress to trouble breathing. Alcohol and sulfites in wine are also common mast cell degranulators. Regarding the constipation, what antihistamines have you tried? Sounds like you may want to consider if those antihistamines have any degranualting or allergen based ingredients in them. Take care, Lyn
  16. In my formal training to take BPs, we were taught to have the arm elevated at heart level for standing BPs. This is also the most common technique used during excercise treadmill tests in hospitals where I've worked.
  17. I find this conversation intriguing. My own experiences and reading have pointed to my immune system as setting off my mast cell reactions leding to cardiovacular anaphylaxis. I even had such an episode in the office of my autonomic neurologist, who recognized my massive flushing as histamine related. This then set me down the path of chronic mast cell activation that triggers my plummeting BP. But I do also have other autonomic symptoms that have been classified as autonomic neuropathy of the sympathetic and parasympathetic systems. Upon looking at this from various angles, I have found that there are gaping holes in the published research and clinical data particularly where these systems interact. In my experience and reading, many specialists just haven't considered data outside of their areas of conventional expertise. I know my endo had a hard time wrapping her head around my fluctuating BP and HR and it wasn't until I kept pushing her in the direction of autonomic, did she even consider it. I miserably failed my TTT a few weeks later. In fact, I've been able to find little published data about autonomic neuropathy, as most of the data is on POTS, so I've had to carve out and piece together resources to connect some dots myself. Same thing with the cardiovascular side of my anaphylactic reactions. But looking back, we can go back to my vitals during reactions and now the puzzle pieces begin to fall into piece. For folks who hold published medical data and medications as gold standard, they may be waiting for a long time to get well from complicated and complex chronic illnesses. I've spent 15 years down the conventional testing, pills and surgery route and only got sicker with every procedure, pill and surgery. Learning about mast cell degranulators has allowed me to identify things I can't tolerate, and the vast majority are synthetic dyes, flavorings, sweetners, and other additives in my meds, food, personal care and home goods. Using conventional approaches to allergies and sensitivites and avoiding these things have helped me tremendously. But several big ticket items are at the crux of my current ongoing issues. After getting a free 23andMe kit as part of a study offered to the mast cell community, I quickly learned of methylation and liver detoxifying enzymatic pathways, but couldn't connect my dots to any of it. After running out of options in either the dyautonomia and mast cell worlds, I turned to this methylation stuff, which is actually the wrong term to call it, as there is so MUCH more to all this than mehtylation. At first glance, methylation looks benign, but after six months of intensive study, I am absolutely convinced that there is plenty of science, anectdotal information, and medical guidance out there for me to finally be able to unravel my own metaboic fubar. Using my polymorphisms found in my 23andMe data, I have been able to connect my remaining symptoms to the SNPs. Funny thing is that I don't have any additional SNPs than what is already linked to my symptoms. Hope this gets me to the next level. I have yet to take a methylation supplement, but have used my own genetic information to guide dietary changes. This all has lifted quite a load off my immune system, therefore limiting my autonomic dysfunction. My overall visable inflammation is down. I dropped a size and a half shoe size in the past few weeks. This tells me I am doing something right. I don't need a published paper to tell me what my own body is telling me. I'm able to read my body better, and developed strategies to limit and accomodate my symptoms. This is what I have been looking for all long. And none of it came in the form of a pill, procedure, surgery or medical journal. I had to do the work of sorting it all out myself. Karen, your approach will fit in nicely here. I look forward to hearing more from you. Lyn
  18. Rama, May I ask who you are referring to as the author of the original methylation clearance theory? I am reading the works of several PhDs and MDs, and not seeing a reference to the patient you are referring to. I've been able to track the theory of impaired detoxification pathways back to a PhD, and then expounded upon by several PhDs and MDs, taking this concept in various tracks from the central concept. The Autism, CFS, EDS, and Lyme infection communities are actively discussing these concepts and connecting the dots in conjunction with the these disorders, but I am not familier with the patient at the center of this theory concept. Thanks for sharing. Lyn
  19. Karen, Sorry about all the acronyms. Not sure what you know, so I'll go through and share a bit on the acronyms I used. CYP 450 enzymes are part of Liver Phase I Detoxification and are companions to Liver Phase II Detoxification where methylation SNPs fall under. SNPs= Single Nucleotide Polymorphisms, transcription errors tested by companies like 23andMe, where I got part of my genome tested during a research protocol testing mast cell disorders as part of myeloproliferative disorders. Now, the price of the genome testing using saliva costs USD $99 through them or a higher with other testing companies using blood. The real value of this testing is in the raw data, and there are several avenues to help with looking up the rs ID numbers, comparing to the risk alleles, and identifying hetero or homozygous status for the important SNPs. There is a growing interest in epigenetics and nutrigenomics, especially with overriding MTHFR SNPs, and now SNPs along the mehtylation pathways. Dr Amy Yasko has numerous resources, including her Pathways to Recovery book that goes into some detail about the individual functions of various genes along those detoxification pathways. Her book and work is foccussed on autism, but has been expanded to include neurological and immune disorders. She also has a molecular biology, medical research and ND background. I have found that my symptoms correlate spot on with my SNPs, and have given me insight in sorting out other issues. Yeah, H1s and H2s may help, but there is emerging thought that this causes competition for the remaining receptors, H3 and H4. I'm now confident it is better to tame the immune responses and get to the root cause of this metabolic imbalance. Some antihistamines contain additives, dyes, preservatives, etc that trigger mast cell degranualtion. Do you list somewhere which antihistamines you actually took? Depending upon your SNPs, some can cause more issues than may be helpful. Back to the acronyms. ALA - alpha lipoic acid, a common supplement to help neuropathy. CBS and SUOX, two genes/enzymes along transulfonation pathway in the methionine cycle. MTRR is in part responsible for recylcling Vit B 12. The rest are part of the BH4 cycle. COMT is responsible for breaking down dopamine, epi, nor epi, estrogen. VDR is the Vit D receptor and in combination with COMT determines ones ability to accept methyl groups. MAO A is involved in breaking down serotonin and involved in melatonin. MAO B is inovolved in breaking down nor epi and epi from dopamine. Hope you can now better digest my previous post. Take care, Lyn
  20. Issie, Your VDR SNP likely has something to do with your need to take alot of Vit D to keep your level up. Lyn
  21. Karen, I'd love to hear your thoughts on methylation and all this. From my reading, i believe that methylation issues AND activation of mast cells are both involved in my case. Since methylation is responsible for deactivating histamine, and histamine is broken down by DAO (extracellular) and HNMT (intracellular), My DAO and HNMT SNPs point to issues here. Mast cells can be triggered by inflammation, digestion, stressors (such as chemicals, stress, hormones, weather, meds, allergens, etc) and set up further cascade through degranulation, leading to anaphylaxis. I face cardiovascular anaphylaxis when exposed to chemicals, such as aspartate, MSG, sulfites, Yellow # 5/6 food dye, and others. Now that I know those ingredients are excitotoxins, and what they do to the nervous system, this fits in my case. I've found that once I removed as many stressors as I could identify, my mast cells calmed right down. They still trigger, but not nearly as much as several months ago. I eat things that limit inflammation (goal is to eat gluten and casein free), low sulfur/thiols and low animal proten (due to CBS issues and lead to high ammonia). I rotate and moderately eat histamine foods, based off my previous reactions, but admitedly don't have issues with histamine, oxalates, or salicylates in my foods. Meds were a HUGE trigger for me. Once I learned of my SNPs through 23andMe, a personal genome service, I was able to chase down the meds and supplements and foods that set me off. After reading up on my CYP 450 SNPs, I have learned that Tagamet is a DAO inhibitor as well as Zantac, ALA, milk thistle, contains sulfur so is contraindicated until clearing my CBS status. My reactions to sulfur/sulfites/sulfa and are screaming that I have issues with CBS and SUOX, and 23andMe confirmed my CBS and MTRR hetero SNPs. From a dysautonomia perspective, my homo COMT, VDR, MAO A and MAO B SNPS all deal with tolerance to accept methyl donors, and point to issues breaking down dopamine, nor epi, epi, serotonin, and melatonin. I have stopped looking for the magic pill and one size fits all solution. I am now using my own biochemistry to guide my personalized treatment. In this light, I am looking to it all: methylation issues, leaky gut, inflammation, underlying co-infections, heavy metal toxicity, mast cell degranulation, nutritional deficiencies, malabsorption, and the list goes on. When you get to the point of wanting to persue this, there are tons of solid resources out there, FB pages, webinars, satelite radio shows, etc. Would love to hear your perspective on methylation and hear how you are able to connect the dots in your own journey. Thanks. Lyn
  22. No wonder I am confused???!!!! I know I posted last night, but then couldn't find it this morning. I then thought that my post evaporated then reposted the bit on the docs. HAHAHAAAAAA. EDS is much more than hypermobile joints. That is just the "classic" version. The classifications have changed over the past few years, but there are several other types out there. I suspect Vascular EDS in my family, as we have multiple generations with aneurysms. My mom has had two types herself: thoracic/abdomal aorta and coronary aneurysms. I have been checked for aneurysms, and thankfully have come back clean, but I've had a rare vascular tumor of the skull, called cavernous hemagioma, and this puts me in that category. Haven't yet chased down the EDS diagnosis, as I am still working on the mast cell and methylation stuff. I'm heading over to the other thread now........... Lyn
  23. Welcome Karen, Here is a link to the US based The Mastocytosis Society list of Medical Advisory Board members. There are two published authors from Europe on the MAB. Dr Valent and Dr Escribano. http://www.tmsforacure.org/medical_board.php Best wishes, Lyn
  24. Karen, Welcome! Glad you felt comfortable enough to begin posting. You will find everyone here very informative and helpful. I also have MCAS and likely VEDS, in addition to orthostatic hypotension and autonomic neuropathy, so understand how frustrating all this is. There is some discussion in the academic world that mast cells could be responsible for the whole mess. But I am finding in my case that I have issues stemming from my inability to process/breakdown/inactvate various items, such as sulfur/thiol based meds and food, sulfite preservatives and food dyes, all related to single nucleotide polymorphisms (SNPs) along my methylation cycle. My CBS SNPs lead to ammonia toxicity and exasperates brain fog. I also have SNPs related to diminished capacity to deactivate and catabolize histamine, norepinepherine, epinepherine, dopamine, and estrogen, all which correspond directly to my specific symptoms. Once you get your feet wet around here, this methylation stuff may fascinate the molecular biologist in you. Here is a link to get you started. http://www.drmyhill.co.uk/wiki/CFS_-_The_Methylation_Cycle. You may want to check out Dr Amy Yasko's work. I have attached a link to The Mastocytosis Society, the US based organization dedicted to mast cell disorders. There are two well published mast cell experts on the TMS Medical Advisory Board, both whom from what I've read, actively diagnose and treat masto and MCAS. Dr Escribano authored the REMA Mast Cell Emergency Protocol, but Dr Valent, I believe, is closer to you. Best wishes, Lyn http://www.tmsforacure.org/medical_board.php Luis Escribano, M.D., Ph.D Director, Centro de Estudios de Mastocitosis de Castilla la Mancha (CLMast) Hospital Virgen del Valle Carretera de Cobisa s/n Toledo E-45071 Spain E-mail: lescribanom@sescam.jccm.es OR luisescribanomora@hotmail.com Peter Valent, M.D. Department of Internal Medicine Division of Hematology and Hemostaseology Medical University of Vienna, Waehringer Guertel 18-20 A-1090 Vienna, Austria Email: peter.valent@meduniwien.ac.at Phone: +43-1 40400 -5488 or -6086 Fax:: +43 1 40400 4030Phone: +34-925269335
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